Dates of my initial Parkinson’s diagnosis and journey; travelling with Parkinson’s. Good initial recounting

Eight months ago, our entire family was together for Christmas. I’ve written about the physical challenges I was experiencing during that time period, a time before I received the official diagnosis. I was having trouble keeping my balance and I seemed to freeze mid-step. I had always moved with slow deliberations, but at that point the movements became labored, almost as if I had no control over them. I couldn’t accelerate them—they seemed to be stuck in a quagmire of unresponsive nerve endings. It was as if my hands and fingers were dissociated from my body. Try as I might, I couldn’t seem to control the fingers over which I had had such great command as a concert pianist. My hands and arms slowed, my legs seemed unwilling to hold me up and transport me with any regularity, my emotional awareness suffered. I wasn’t myself. My family noticed. Three months later, in March 2023, my wife and I heard the words “Parkinson’s Disease” uttered from the movement specialist’s mouth. We now had an official diagnosis: I had Parkinson’s Disease. “Well, dang it,” I said. It seemed like the start of a new journey, but the end of a life I had known and loved for so long. Perhaps I should have cried, or screamed. This was a life-altering diagnosis. I had an incurable, progressive movement disorder. It was not going to get better. It would only worsen, but I could take steps to manage the disease and its progression. Indeed, this news was going to change my life, and also the lives of my wife and family.

I started to take medication right away. It seemed to help the symptoms and gave me hope. There were good days and not so good days. I explained the disease to our kids, to our closest friends, some of whom couldn’t think of the right words to say, so they hugged me and demonstrated their support. Truth be told, neither they nor I knew what this really meant. I heard stories of others who were trying this activity or that therapy, with good results. Perhaps I should try that. I didn’t want to try anything. I was tired, actually exhausted and fatigued. I had to focus on work. I had to accept my limitations. I had to fight to stay strong and active.

My wife, daughter and I took a short trip the following month. We didn’t know what to expect, but I had to attempt it. The airport was difficult, the walking almost insurmountable. They met me at the gate with wheelchairs. I didn’t want to be pushed in a wheelchair. I didn’t feel disabled, I just had trouble walking. Since then, my wife and I have gone on two additional car trips. We got better at managing the demands of the disease. I balanced rest time with sightseeing time. I loved the times I spent with friends and family on those trips, but I had to balance. I grew to excitedly anticipate activities, rather than dread the strain they would place on my muscles. My attitude has shifted, and I treasure moments more than ever.

This weekend all of our kids were together for some wedding showers. Eight months after the Christmas of 2022, we have all relaxed into some understanding and acceptance of Parkinson’s. My phone alarm goes off to remind me that it’s time to take my medication. The room full of family accepts that I need to stop and open my pill container. I fall asleep in the chair for one of my many rejuvenating chair naps, and my family accepts that I get tired frequently. We plan future trips with the acceptance that I will need to be aware of walking distances. I help my wife in the kitchen as much as I can. She suggests things I can do to help, and we both know that I will become tired after doing them and need to rest. That’s OK, because I know I’m participating in life, and my wife and family understand my limitations.

As I continue to write these posts, I am ever grateful for people who understand and support. I have not arrived at any final destinations yet, but I keep working at my goals each day. Today marks Day 28 of my 100 days of writing. I am proud of the four weeks of writing that I have produced. I look forward to continuing my writing practice, and processing the feelings and experiences that accompany my days with Parkinson’s. I plan to continue writing, and sharing with you, the reader. I hope my posts are worthy of your time and attention. Until tomorrow!

791 words
Day 28: August 27, 2023
Success!